Promises To Keep – Confessions Of A Rotten Little Bastard, Part 25

I have not written in my blog for months. No recommendations of used book stores in New England, no stories about my kids, no out of print authors that I enjoy reading – and no posts about Mom’s journey with dementia.

Mom has been steadily losing more and more of her memories and cognitive process. She stopped answering the phone as she was receiving ‘robo-calls’ that were causing her a great deal of anxiety. She grew less and less able to actively and meaningfully participate in a conversation.

I would, for the first couple of years after she moved into assisted living, speak with her every day, or every day that I could reach her by phone. On days when she was down, or frustrated, or feeling as if there were few things to ‘go on for’, I could always get a laugh from her, always turn the conversation to something positive. She would tell me how much she looked forward to our calls after a while. It was one thing, one of the few things, I could do for her, my being in Boston, her being in Florida.

Mom and I talked many years ago now (and many times) about her ‘end of life’ wishes. She repeated her wishes to me many times, and sometimes asked me to state them to her to, I suppose, test my memory. It reached the point where I could recite them in the exact order that she did, as if it were a grocery list that never changed from week to week, or a never changing inventory in an emergency supply closet, all the ‘just in case’ things that you might never need but should keep handy – and I, ever since then, have been her ‘just in case’.

She had an attorney write a will, as well as a living will, to cross every T and dot every i in a legal sense. She also had them draft a power of attorney, and a medical proxy to grant me the ability to act on her behalf. She gave me copies of all these documents, backup copies, and then new copies (and backup copies) when she made a few revisions after my sister died, and as grandchildren came into her life over time. Despite those ‘revisions’ to the documents, however; the unwritten but oft-spoken wishes never changed for her. My memory of them never did either.

Thus far, every promise that I made her, save for one, has been possible to keep. I could not prevent her from going into assisted living. That isn’t technically what she asked of me, to ‘blockade’ her from it, but rather to provide care for her at home. I tried that, following her dementia diagnosis, by setting her up in an apartment 1 mile from me. It was a rough time for both of us (which you can read about in earlier ‘Confessions’ posts and which prompted me to start writing about the experience here), and eventually was not possible to continue either in my town or in my brother’s home in Florida. The need outweighed the capability. Fortunately, knowing that she was cared for round-the-clock, in a facility that she could have her own room in, and that I could go back to being her son rather than her caregiver; the relief outweighed the regret.

Mom’s ‘decline’ with the dementia has been gradual, but still relatively steady, unlike my Dad who had a ‘decline and plateau’ from the beginning to the end. He never lost the ability to carry on a conversation (thankfully for him as he loved to spin a tale of his boyhood days in Brownfield, Maine). He never forgot ‘how’ to eat, how to dress himself, how to bathe, nor who people were. Dad’s challenges with dementia were more in following through with a process from start to finish (like turning the oven on and then remembering to turn it off) and it was a bit ‘accelerated’ by the stroke he suffered several years before he did die. Dementia didn’t rob him of as much as it has robbed Mom.

Earlier this year Mom suffered a series of ‘seizure’ events related to an infection in her urinary tract. UTIs are not uncommon in the elderly. They present in different ways than they might in younger people, and are far more frequent to appear, but they are typically treatable with antibiotics when the symptoms present. Mom was hospitalized due to hers. She was eventually released to her assisted living, but a sharp decline had taken place, and it became necessary to address heightened needs and ‘minding’ that she would now need. The assisted living facility she lived in said that they could still meet those needs, but when Mom returned to her then ‘home’, on the first night of her return, she managed to get herself out of bed and fell – fracturing a vertebrae in her neck, and sending her right back to the hospital. My brother and I then looked into placing her in an alternate facility, following the necessary rehab period for the neck injury, that would provide her with more skilled long-term care.

‘Long’ term has turned out to be not very long at all. Mom has stopped eating, all but completely. The rehab facility that she has been staying at has stated that either she will have to have a feeding tube inserted; or we needed to look at hospice care for Mom. She won’t recover from this.

There are things we tell our children to placate them. We promise them that there are no monsters under their beds, that the tooth fairy only wants their teeth that fall out and won’t play with their toys. We tell them that we’ll always be there to pick them up when they fall, that eating your vegetables will make you big and strong, and that the fat guy in the red suit that leaves presents under a tree once a year can see every.single.thing they do.

We do these things, promise these things, to not cause them anxiety and fear unnecessarily – we also tell them, when they ask if we’re going to die someday after the passing of a loved one or friend, things like while everyone dies eventually, and none of us can tell exactly when, it won’t be for a long, long time. Sometimes we children ask them to promise us that and they say, ‘I promise.’ I’ve made a similar vow to my own kids in years past. I’ve perpetuated the Santa story until they reached a certain age. I concocted an anti-zombie spray (water in a hairdresser’s spray bottle) to provide an extra layer of protection for their bedroom in the areas they deemed most vulnerable. I made all those same promises that so many other parents do with their kids. Our kids need a lot from us – time, attention, love, support, caring, supervision, stability, etc., etc., etc. We give it to them, because that’s what, ideally, we, as parents, sign up for when we accept the job.

Sometimes our parents have to ask us for things in return. Sometimes they have to plan ahead and ask their child or their children to make certain guarantees to them ‘just in case’ they, for whatever reason, don’t have the ability to make all their own decisions.

‘Promise me something, Brad – and this is very important to me, so please, please, please promise me this. I hate to ask this of you, but I don’t know that I’ll always be able to speak for myself, and I need someone to count on who I know will do what I ask and what I want, no matter how it makes them feel. I don’t want to burden you with this, but I have to have someone. Brad; I don’t ever want to be kept alive artificially. I don’t want to be laying there in a bed, all but dead, no good to anybody, and having some machine take care of me. I don’t want people to come looking at me, hoping I’ll wake up, sitting there sad and devastated. Don’t do that to me, I couldn’t stand it. Don’t let me live like that, just to keep me around. I don’t like to say these things, especially to my child. But don’t do that to me, please. Let me go if things are that bad, and there’s no hope for me. Let me go. Promise me that, honey, please? Please do that for me.’

I know in my heart, Mom, that you would refuse a feeding tube. I know that you would consider that being kept alive artificially. I know that you’re still there inside, deep inside the fog that has grabbed you and won’t let go, and are telling me, by not eating any longer, that you are choosing your time to go, and it’s now. But you can’t verbalize that. You need a voice, you asked me to be that voice – to say, ‘No, no feeding tube – I agree to hospice.’ for you, because you won’t get any better now. I have to say that for you. I have to say it because you can’t, no matter if I feel ready to have both my parents gone before I hit fifty years of age. Before my kids grow up and you get to see the men they will become. Before I ever get to beat you at a game of Scrabble. We tied…once…the last time we ever played. That’ll have to do. I have to make it do. I have to accept it, all of it, no matter how it feels.

I have to, because I made a promise to you, and it’s a promise I have to keep.

I’ve always really enjoyed your writing on family life and memories. Thanks for bringing that honesty to the subject of death, it’s something that we often try to avoid out of fear or not being positive but everyone reaches the end of the road sometime. It sounds like your mother was very clear in her wishes when she was able to be, but there’s a world of difference between making and keeping that promise. Good luck from a long-time reader.